Just need to tell my story

Posted by mlwmacon on 5/6/2015 at 6:59 PM

Hello, I'm new to this forum. I am a 48 year old mother of two who has worn extended wear contacts since I was 17. I was never told by my eye doctor not to sleep in my extended wear contacts. The name of the contacts were Night and Day. Well being a contact wearer for this many years I would occasionally get an eye infection about once every five or six years. Well in October of 2014 my life changed forever. I woke up that morning with my eye feeling irritated and made an appointment with my local eye doctor. He examined my eye and advised me I had the largest ulcer on my cornea that he had ever seen and he didn't feel comfortable treating it. He got me an appointment with a local cornea specialist within the hour. Upon meeting the cornea specialist she examined my eye and said she though I had Acanthamoeba but she was not set up to do the type of culture I needed so she got me an appointment with another cornea specialist at Emory University Hospital in Atlanta, GA. She told me to drive the 2 hours and go straight there that they were waiting to see me. Well after being treated for a viral infection then it was determined that I had a fungal infection. The fungus I had was not a normal fungus and was not responding the typical way to my medication. I now started on my odyssey of having to make the 2 hour ride along with the 2 to 3 hour wait everyday for three weeks. All this time my eye continued to get worse and I started having terrible headaches. I told my doctors (all 3 that I was being treated by) and they just kept telling me that it was just due to the fungus which had almost completely destroyed all of my cornea. They prescribed me narcotic pain killers but the headaches kept coming. Long story short, I had the headaches because all this time my eye pressure had skyrocketed and no one had discovered this. When it was finally realized my pressure was well into the 70's. I was immediately taken in surgery to try and get the pressure down and was taking 9 different eye drops as well as pain meds. Jumping ahead, my optic nerve died and I am blind in my left eye now. In February I had a corneal transplant due to the damage to cornea and the constant pain I was in. No pain but within two weeks I started getting a cataract in that eye. Well now it turns out that although I'm still blind in that eye, I now have to have the cataract removed next week because it has filled the chambers in my eye and is now compromising the transplant. On a side note, the fungus culture came back and I was advised that the type of fungus I tested positive to was some rare fungus that only myself and one other man in Australia have ever had. It is actually a type of organic fertilizer that is not commonly used in the United States. I have no idea where I would have been exposed to this. It just seems like a never ending battle. Last week was my 46 visit since October 22, 2014. I know I still have sight in one eye but I am in a terrible depression and can't kick that "why me" thinking.

Re: Just need to tell my story

Posted by Empish on 5/7/2015 at 1:07 PM

Hi,
I agree with Audrey an everything she has shared with you. I too went through a depressing period when I lost my vision; more anger than anything. Counseling and joining a support group were very helpful. Also finding friends that were visually impaired to talk to was also helpful and actually still is to this day. I too am in the Atlanta area and my eye doctors are at Emory too. I was diagnosed with a rare eye disease that only 15 people out of 100,000 a year get so I do understand the situation with the fungus infection. The back and forth to doctors and the ups and downs of medications, surgeries and procedures is all familiar to me as well. Please continue to share your story and reach out to us.

Re: Just need to tell my story

Posted by ADemmitt on 5/7/2015 at 9:15 AM

Hi... My name is Audrey and I am visually impaired and a Peer Advisor on VisionAware. You have gone through a very traumatic ordeal. And you are so right that it is helpful to tell your story! I am sure there is a range of emotions that you have gone through and that in itself can be exhausting. I understand depression and have experienced it myself. I would suggest to you to get some counseling. Depression is painful and it changes the way you're able to function in your other roles in life. Treating it is very important... And it will help you process all that you have been through. Part of what you're going through is a grief process you have lost an essential function. You are most likely feeling some anxiety, fear, and certainly some anger over the way your condition was handled. Counseling can help you manage these powerful emotions in healthy ways so that you can move forward. Perhaps you could start by talking to your family doctor and asking for a referral to a mental health practitioner.

By the way, I live in Georgia and also go to Emory Eye Center. If you would like to contact me and continue our conversation you can email me at ademmitt@afb.net. I wish you healing and all the best, Audrey

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